Pouchitis incidence after jpouch- 94% after 6 years?!

If it ever gets to the point where I need surgery I will have to opt for not doing the jpouch. The other surgery has a whole lot less complications and with me not having a spleen I can't afford any complications. One bad complication and I could be dead.

2 lymph nodes, 2 ovaries, 2 fallopian tubes. I had very bad doctors who missed my perforated colon. I was told I was overreacting to the pain and would be sent home later that day. It was 18 hours before I had surgery. My colon had literally fallen apart and the acids had damaged the above organs. The surgeon said it was the worst disaster he had ever seen. Luckily, I was having a great time before the pouchitis developed. Just called the surgeon because the symptoms have gotten worse. Flagyl is not working at all. Until now the j-pouch was more successful than I imagined.

Eh, I have a temp iliostomy with my 2nd surgery coming January 3rd. I'm having all 3 surgeries done at the Cleveland Clinic. My surgeon has been fantastic through the whole ordeal, has answered all of my questions and made me feel at ease with this. When he told me before I went under that I'll be a much happier person when I wake up, I knew I had made the right decision.

So far I could NOT be happier with surgery. I can do everything now and am on zero medication for it. I was in and out of the hospital numerous times before the surgeons came in and basically said "Your colon needs removed; another flare like this could result in emergency surgery to remove it." I was on Prednisone for about a year, thankfully not having any side-effects other than severe agitation. I actually lost weight on the drug. I refused to do any sort of biologic, as the Cleveland Clinic GI and surgeon told me if I did not respond well to steroids, even IV ones, it lowered the chances of a biologic being a sufficient treatment option. Despite that, though, my mind was made up well before the final options were layed out for me. The straw that broke the camels back was my colonoscopy that had a 4 page result that basically said my colon was "infested" with pseudopolyps and not a single layer of healty mucosa was found until they hit my Ilium, which was completely healthy. With Crohns Disease, the Ilium is commonly also affected.

Surgery happened in mid-June, was in the hospital for about 4 days then sent home. Recovery was obviously uncomfortable but went smoothly until 2 weeks later when I got an infection. I was put back in the hospital for 4 days and they told me I tried to come off Prednisone too fast and told me to follow the tapering schedule to a T. I did, and have had ZERO issues since.

I can eat anything I want and can do anything I want. I go on long trips with friends now, have dinner out of town, go the movies and sit in the middle, etc. I never had these options before. I missed many family dinners because of the fear of my UC, and worried in movie theaters to a point where the movie itself was unenjoyable.

I realize there are chances of issues arising from the 2nd and 3rd surgeries, but I am not worried in the least about post-surgical issues when they can easily be rectified. Also, if things were to really get bad and I had to go to a perm-Ilio, I would not mind at all. As weird as it sounds, I've grown fond of the little guy. I take care of him and he takes care of me. Basically having my colon removed was the best decision I have ever made when it has come to UC. I regret absolutely none of it.

Does anyone know what the risk factors are for chronic pouchitis? Eg mild vs severe UC going into surgery? diet? Etc? Or is this another mystery for whichthe docs are as totally, Utterly ignorant as to cause as with UC? Chronic use of antibiotics to me sounds as bad (due to fostering resistant strains, as well as other toxicities) as chronic use of pred. "darn" this awful disease.

You may laugh at sitting in the middle at the movies, but when you finally get to do those small things UC took away from you, it feels like a win everytime!